Thursday, June 7, 2007

Oh what to do.....

We got the results from the sleep study back, and they are not good. Turns out our sweet as pie Rhett is having apnea episodes an average of every 2-3 minutes a night. Not good, not good.

So at first his pulmonolgist says lets take out the tonsils and adenoids. Which you would think would be a great way to solve this obstruction problem. Well for most people it would, but our little Rhett is a little more complicated than that.

First of all it is a great possibility that he has tracheomalacia, (a floppy airway). On top of that he may have subglottic stenosis, (Build up of scar tissue from being intubated with a tube that was too big, as well as being intubated for more than 7 days). He may also have vocal cord paresis (where his vocal cord is not functioning right due to the same intubation problems).

So here is the problem. If he has the tracheomalcia then there is a very good chance that those tonsils, although they are very large, could be supporting his air way and keeping it open. If we were to remove them, then we would be taking the chance that his airway could collapse. Thus needing a tracheotomy. That would not be good.

If he has the subglottic stenosis and/or the vocal cord paresis then they will have to go in and surgically take care of it. They would do this by taking a laser to the scar tissue and burning it off.

So here are the statistics that I was given. If you were to take 100 kids with Down Syndrome, who had the same problems as Rhett, take out their tonsils and adenoids, 3-5 percent of them would get worse. 30 percent of them would stay the same, and around 76 percent of them would get better.

Now here I am left with the thought of odds. Since Rhett has been born odds mean nothing to me.

The chances of me having a child with Down Syndrome was 1 in 1,500.

He had a 50/50 chance of having a heart defect. He got one of the most complicated ones.

The odds that he would have the complications that he did with his open heart surgery were only 3%.

The odds of him having that Morgagni Hernia were, well lets just say that to date, he is only the 19th child with Down Syndrome to ever have it.

Then there is the odds of him having a ten fold overdose of pain medication while in the PICU. Well, researching that, from what I understand it was the first time in over 30 years at that hospital that an overdose to that magnitude has happened. This children's hospital serves over 5 states. It is a busy hospital.

So in all reality this 75 percent chance of the T&A actually working, well, I am not sure that those are good enough odds to outweigh the risks involved. It is Murphy's Law according to Rhett that if something is going to go wrong before, after, or during a surgery it will happen to him.

Now I am not being a pessimist, I am just stating the facts of everything that we have dealt with over the last 20 months. I have to take all of this into consideration before I put him under the knife again. I also want to make sure that we are taking the least invasive route possible.

So here are our options thus far....

1. Take out the tonsils and adenoids, run the risk of airway collapsing.

2. Take out adenoids leave tonsils in, use CPAP to keep pressure in the airways at night.

3. Take out adenoids, shave off part of the tonsils, and see if that helps. We may still have to use CPAP, and we will have to go back in a few years to have them shaved down again. But by then his airway may have grown enough that they could come out. (right now his tonsils are 3+. 4 being the biggest they get.)

They are going to go in and do a bronchoscopy where they take a look into his airways to see what is going on. So ultimately the results of that will play a huge part in our decision. But man this is so hard.

The obstructive apnea could be playing a big role in Rhett's Pulmonary Hypertension issues. So we need to do something, but I just need to make sure that I am doing what is best for him. We see the ENT on the 2nd of July, and he also goes in for a sedated Echo on the 17th of July. This Echo will give us an idea of what his pulmonary pressures are.

If you remember, the last one measured at 53, where a normal person is around 22. But when they did that Echo it was just before they operated on his hernia, and his intestines were up inside his chest pressing on the heart and lungs. That could have played a big factor in pressures being that high.

So for now we just sit and wait for the next round of testing. We are back on supplemental oxygen at night until we can get some more answers. All I can do is love the little guy with all of my heart and thank God for every day that we have him. I have always said that if we can make it through the first two years we will be okay.

Today Rhett is 20 months old, so we only have four months to go until it is smooth least that's what I like to think!


L. Noelle said...

WOW! I can see where you are faced with some very dificult decisions. One thing that most pediatricians don't know is that most of our babies/chilredn have some form of sleep apnea. Low muscle tone, almost always contributes to that. Jaden, just went through the Blue Plate Special! Adenoids, Tonsils ear tubes. This just happened Monday, and was the first time he had ever had surgery. Funny enough, we weren't nervous about it. Obviously it's nothing like heart surgery, so I just kept telling myself, it's only 20 minutes and it will be done. The surgery went great, but the recovery has been a little rough. He is definitely in pain without the tylenol and codeine. The sleep study we had with jaden was very similar. He had severe sleep apnea also. I knew that, I just didn't know how bad. You could just hear the adenoids blocking his breathing! After surgery, the dr. said the adenoids were severely enlarged and the fluid build up was sticky and hard. (Guess it had been there a while). Anyway, I don't blame you with the Odds game. Listen to your instinct, talk to a lot of other parents who have been through the surgery, then make up your gut feelings! I wish you the best, and will stay posted.

~Melissa~ said...

Wow - that is a hard choice. I understand what you mean about odds - it's funny how those little figures change your life isn't is? I think that you should follow your mom instinct. Rhett is amazing and I think you'll be smooth sailing very soon!

Sara said...

Nathaniel has all thos, and the trach :p The Dr is refusing to take his tonsiles out too. We are looking at Cpap, then maybe we can get the trach out. I hope it all works out for you and Rhett.

jennifergg said...

Thinking of you, and hoping and praying that the best answer becomes clear...

Kim said...

Wow that is a lot to think about. We have, I say we but Miss T, adenoids out on the 20th and I am scared to death!! I can't imagine what you are going through. May I put Mr. Rhett on our chuches prayer list? I will keep him in my prayers. Keep us posted.
Peace Be With You
Kim and Miss T

Kari said...

WOW I don't envy your decisions. We just had an Oximetry study (the wait list for full sleep study is 6-8 months)and Tristans baseline is 90 and he dips while sleeping and needs Adnoids out and just that has me all upset. I just wanted to send you huge cyber hugs and let you know your in my prayers!!

Shannon said...

I hope everything comes out okay! Hang in there!

LauraQ said...

Oh Pam,
I have no advice, I am so sorry you have to deal with all this! Just want to let you know that we will surely keep you and that sweet Rhett of yours in our thoughts and prayers!

jenjerjack said...

Thinking of you, and hoping and praying that the best answer becomes clear for you. It is such a hard choice.
Hang in there!!

jotcr2 said...

That sounds like incredibly tough choices for your family over the past 20 months. Rhett is lovely, what a gorgeous smile he has - really knowing grin.